This week sees the launch of a major new crowdfunding campaign: the Microbe Discovery Project. The campaign aims to raise $1.27 million (£760,000; €910,000) by 31 December 2014 to fund world-famous virus-hunter Dr. Ian Lipkin’s ground-breaking study of ME/CFS and the gut microbiome – our intestinal ecosystem of bacteria, viruses and fungi.

The study

The study is spectacular, because of the series of crucial, cumulative steps that it makes to identify what might be driving our immune problems and hence our symptoms.

The study will take place at Dr. Lipkin’s 60-strong Center for Infection and Immunity at Columbia University in New York, the world’s largest and most advanced academic center in microbe discovery and diagnosis.

First, blood and faecal samples will be taken from 100 patients who each fulfil both the Fukuda and Canadian Consensus diagnostic criteria, and from 100 matched controls. Dr. Lipkin’s team will identify the viruses, fungi and bacteria in the guts of the study subjects using high-throughput DNA sequencing. They will then determine the amounts of each microbe using highly accurate real-time PCR assays that are specific to each microbe.

Next, blood levels of cytokines (immune-system messenger molecules) will be measured to produce an immune profile for each patient. Biostatisticians will then analyze the cytokine and microbiome profiles to identify a potential link to ME/CFS and to define the relationship between immune markers and candidate microbes. In addition, the team will develop antibody tests for any microbes that appear to be related to immune dysfunction.

These stages together will make this a definitive study that has the potential to produce diagnostic tests for key microbes and to lead to treatments using drugs, probiotics or exclusion diets.

Some of these treatments, such as exclusion diets, have the potential to be rapidly adopted without having to go through the lengthy process of clinical trials and approval by the US FDA and other countries’ health institutions. In the absence so far of any FDA-approved drug treatments for ME/CFS, Dr. Lipkin’s study therefore appears immensely attractive.

The NIH falls short

Dr. Lipkin and his researchers have already sought funding and have so far been unable to fully finance the study. The NIH, of course, has always treated ME/CFS research poorly, giving us roughly $5 million a year to MS’s $115 million. Dr. Nancy Klimas has reported that in 2014, the NIH will give $3 million to ME/CFS and $18 million to study male-pattern baldness.

So, with funding to do only 10% of the work for the study, Dr. Lipkin put out a plea for funds during the 10 September 2013 CDC PCOCA Telephone Broadcast, saying, “[…] it is probably inappropriate for me to be passing the hat, but that’s precisely what I am doing.”

Video: Dr W. Ian Lipkin appeals for support for the ME/CFS microbiome study​

One patient makes a difference

A member of the campaign team and Dr. W. Ian Lipkin at the Stanford ME/CFS Symposium 2014

Vanessa Li, an ME/CFS patient, heard the broadcast and was so frustrated that such an important and promising project could be lost that she decided to start a campaign to crowdfund it. She contacted Dr. Lipkin’s office, gained their agreement for a campaign, and recruited other patient-volunteers to help.

Her timing for such a crowdfunding project is perfect. During the last year, patients have learned that together they can raise very substantial sums extremely quickly if they’re donating to a specific project rather than to a charity’s bottomless general research fund.

We’ve seen patients and supporters in Norway – with a population of only 5 million – raise $430,000 in 90 days for a clinical trial of Rituximab and, since then, a slew of US-based ME/CFS crowdfunding campaigns reaching or exceeding their targets at astonishing speeds: $213,000 in 31 days for the Canary in a Coal Mine documentary film; $18,000 in 35 days for the documentary The Blue Ribbon; and $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.

It’s clear that when patients see a project that inspires them and an organised campaign gets behind it, the donations come storming in. We also know that when many small donors get the fundraising total to a certain level, large donors come forward: this is exactly what happened when a single donor gave $300,000 to Invest in ME’s UK Rituximab trial for ME/CFS after patients had raised $90,000.

The campaign

To get the fundraising drive underway, the campaign team have created a Facebook page with news and updates and a website designed to funnel people straight to Columbia’s donations page (if you need help, visit the campaign website’s donations page for instructions). The site includes a video message from Dr. Lipkin, information about the study and the scientists, the latest news, updates on the total sum raised, and suggestions for how you can fundraise and help spread the word about the campaign, including a template letter you can send to your local newspaper.

Columbia University Center for Infection and ImmunityImage courtesy of CII

The Center for Infection and Immunity themselves are, of course, also promoting the study to potential donors via their own social media.

The campaign team have contacted leading bloggers to ask for coverage; this article on Phoenix Rising alone will reach thousands of readers. To get the message out even further, the fundraising team will conduct a mass email and Facebook contact campaign to tell individuals and organisations in our community about the project and to ask them to spread the message through their own social networks.

The team have plenty of other plans up their sleeves, which you can find out about on their website and Facebook page as things start rolling.

A rising tide

It’s hard to overstate Dr. Lipkin’s international reputation – he has just been awarded the highly prestigious Mendel Medal, given to outstanding contemporary scientists of the calibre of Nobel Laureates – and it is also hard to exaggerate what his involvement in our disease could mean for us. A finding from his laboratory would get the kind of attention from scientists and clinicians that at present we can only dream of and has the potential to lead rapidly to treatments.

There is already tremendous excitement about the study in the ME/CFS community and it’s building. A crowdfunding campaign for Dr. Lipkin’s project will attract attention from our own community that other studies would struggle to get and will allow us to reach out beyond we few thousand who follow blogs and forums and access the wider world of ME/CFS patients and beyond, just as Maria Gjerpe’s MEandYou campaign raised the profile of the disease across Norway.

Our donation base will permanently grow. Every other study that we want to crowdfund in future will benefit. A rising tide floats all boats.

So, donate from anywhere in the world, visit the campaign website, find out how to fundraise and to spread the word, and join with us.

Dr. Lipkin’s involvement gives us an unprecedented opportunity to change the game. Let’s take it!

Given the importance of spreading the word about this major appeal, Phoenix Rising is happy to permit immediate republication of the entire article. Please accompany with the following accreditation: ‘Article by Sasha, first published on Phoenix Rising: http://phoenixrising.me/archives/24385’ Thank you.

I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and resources to publishing this article, featuring it on the top banner, and including it in the upcoming PR newsletter. My biggest and sincerest thanks to all.

good on ya. Good to put a name to the face too.
Just wow, your an inspiration for getting something like this started.
I cant believe $18mill for male pattern baldness, tell all the baldies to stop worrying about vanity, they can do cbt/get for hair growth and cfs/me will have that money for real research.

It's amazing we can't get funding for this. One of my dad's colleagues has just been awarded a £1.9million (note that is GBP and not dollars) grant to study the relationship between the human and the chicken.

I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and resources to publishing this article, featuring it on the top banner, and including it in the upcoming PR newsletter. My biggest and sincerest thanks to all.

I would like to echo your sentiments. Phoenix Rising has been more of a family, more of a friend to me, than those that walked away when I needed them most.

I have taken for granted the work they do, the advice and help they give.

It is a source of concern to me that those that take the time to moderate the board, time to write the articles, especially the interview with Dr Lipkin ( and there are many others ) do so in ignorance of the gratitude of those such as myself. I hope there is little doubt now.
Perhaps you'll never really know just how thankful I am. In fact, I am almost ashamed to admit the depths to which I have come to rely on Phoenix Rising.

It is all the more remarkable that you are poorly yourselves.
It is a thankless task, and in truth, it is not one I would be willing to undertake.

Even if you can only donate the price of a cup of coffee or of a magazine or a paperback book, it will all add up – and this is the sort of exciting, ambitious campaign that it's great to feel a part of.

I donated to his department when word of this need first came out, but I've donated again now, earmarked specifically for this campaign. I trust his credentials as a researcher, and if this is the direction he feels would be most useful for us to explore next, I want to do everything I can to make that happen.

I would strongly encourage anyone in the U.S. to bring this need to the attention of their representatives as well. Underfunding tends to get blamed on a lack of interest from credible scientists. Well, Dr. Lipkin is certainly credible, and interested…

All donations given at Columbia's gift-giving link from October '13 to date go directly to the microbiome study. We had a couple of problems before getting Columbia to change their drop-down menu to make this more obvious but even before those changes had been made, Columbia had confirmed that any donations given from October onwards went into the same microbiome study pot that your second donation has gone to. Just wanted to let you know all donations given since October went to this study

Many, many thanks to all of you working on Phoenix Rising and this thread in particular. It's true, your site has given us great companionship, and hope, as well, by giving us vital information about research and so on over the years.

This study sounds tremendously useful and I too would drop everything and fly to the USA to be part of the study. If only… Even so, I've already donated and I'll do so now, again, today!

But I'm curious about how much has already been raised and I'd love a running total of the amount, put somewhere prominent on the home page, so every time I look at Phoenix Rising I can feel part of the project.

If you look on the right hand side of the homepage on http://www.microbediscovery.org/ you will see the amount of funds raised so far. Right now we are working very hard to get Columbia to give us updates more than twice a week, but tomorrow (Friday) happens to be the second time in the week when the total will be updated, so be sure to check over at the site tomorrow for the most up-to-date total!

Big thanks to you and all our other kind donors for your continuous support

We're all very used to sites like Kickstarter and Justgiving now, where you donate and you see the total update instantaneously – it's very thrilling!

For this project, money goes in via that Columbia University standard donations page and it's just not like that – updates have to be obtained from the CII's office so there's a built-in delay and some administrative faff for them with the university.

It's clear from messages that the team are receiving both here on the article comments and through direct contact, though, that a lot of people are donating!

If you do donate, please post about it. It's not boasting. It's helping to set a social norm. Research shows it encourages other people to donate, so don't hide your light under a bushel!

As I said in Simon's original article, if every ME/CFS patient in the United States gave only $1, we would already have raised $1 million–the CDC estimates there are at least 1 million ME/CFS patients in the United States.

We're all very used to sites like Kickstarter and Justgiving now, where you donate and you see the total update instantaneously – it's very thrilling!

For this project, money goes in via that Columbia University standard donations page and it's just not like that – updates have to be obtained from the CII's office so there's a built-in delay and some administrative faff for them with the university.

It's clear from messages that the team are receiving both here on the article comments and through direct contact, though, that a lot of people are donating!

If you do donate, please post about it. It's not boasting. It's helping to set a social norm. Research shows it encourages other people to donate, so don't hide your light under a bushel!

Thanks so much to all who have donated – keep it coming!

:thumbsup::thumbsup::thumbsup:

I've donated, my parents have each donated, I recruited a number of facebook friends to donate and two of them shared, and one person said they will raise cash for it with a half marathon he has coming up!

It is frustrating we can't see the total. I'd like to see that ticking on upwards as it would act as something of a motivator.

Thank you, @Cheesus, for recruiting so many people to donate (and please do thank your friend who's running a half marathon for us)!

You have my word as campaign initiator that we are working as hard we can to get the fundraising total updated every day from Columbia. We're working hard to get a daily update, but this might not be possible because of administrative issues.

I've donated, my parents have each donated, I recruited a number of facebook friends to donate and two of them shared, and one person said they will raise cash for it with a half marathon he has coming up!

It is frustrating we can't see the total. I'd like to see that ticking on upwards as it would act as something of a motivator.

That's fantastic, Cheesus – I should also take my own advice and say I've donated and so have my family.

Yup, I'm at one with you about the joy of seeing a concurrent total – we'll just have to imagine it for now! 😎

Just a few suggestions for the Microbe Discovery website – If there could be a small block of text under the "total raised" box to indicate how often the total is updated – that way those that go to the website would know why the counter didn't change when they made their donation. At least thats what I was thinking after I made mine and I had to look back at the comments here to figure out why.

The other suggestion I have… I think one thing about the Blue Ribbon project and Canary in a Coal Mine that made it successful on Kickstarter was the compelling video on the front page. I think the interview with Dr. Lipkin is great but maybe we could contact Jennifer Brea or Ryan Prior about doing a bit of editing to better relay the urgency and significance of this work.

Its so disheartening that those left with this condition have to find the funds to pay for research. Especially when there are so many of us that have been denied for government assistance/disability. I've had CFS for about 5 years and I am still waiting on my disability determination but I have donated – because I feel like I need to help myself! I hardly have any money in the bank but I do believe that Lipkin is on the right track.

I just want to second Quilp's comment

I would like to echo your sentiments. Phoenix Rising has been more of a family, more of a friend to me, than those that walked away when I needed them most.

Last comment – I am so grateful to everyone at Phoenix Rising for everything they do – Most of my friends walked away from me when I became sick. Just being able to read posts from people going through the exact same thing as me makes a world of difference in my life!

Maybe everyone has already thought of this, but I'll put it out there just in case. Before donating, consider if you have a family member or good friend who works for a medium or large size company that might match their employees charitable contributions. This is a very common company policy, although many people are unaware of it.

By giving your contribution to your family member/friend, and having them make the contribution instead, you could capture their company's match and effectively double your contribution. In addition, your family member/friend might benefit from a tax deduction for the contribution, whereas many of us living on disability would not. Who knows, if you broach the subject with your family member/friend maybe they'll be willing to contribute a bit on their own!

There's nothing even remotely illegal or unsavory about this, it's just a way to maximum any contribution you're able to make by enlisting the help of family and friends. People often ask "but what can I do for you?"…well, this is something they can do for you that costs them little or nothing.

That's interesting, @geraldt52 ! Do you mind if I ask which country that's in? I'm not familiar with it.

USA, although I knew of a British company operating in the US that had the same policy. As I said, many people are unaware even that their own company has such a policy…it's worth someone contacting human resources to be sure. Many companies have dollar limits and most require the charity to be "qualified", which I'm sure Columbia is.

If you go through the donation process on the Columbia website there is actually a section that asks if your company does matching contributions. I think I remember they even have a list of companies that do, though I wouldn't rely on that list as being complete. I also think that if you check yes Columbia will contact the company and take it from there.

USA, although I knew of a British company operating in the US that had the same policy. As I said, many people are unaware even that their own company has such a policy…it's worth someone contacting human resources to be sure. Many companies have dollar limits and most require the charity to be "qualified", which I'm sure Columbia is.

If you go through the donation process on the Columbia website there is actually a section that asks if your company does matching contributions. I think I remember they even have a list of companies that do, though I wouldn't rely on that list as being complete. I also think that if you check yes Columbia will contact the company and take it from there.

I did that – I'm on p. 4, headed 'Review' – am I just not seeing it? :thumbdown:

Must be after you have entered your payment details then – I can't afford any more this month or else I would work through it – but we had raised this matching of gifts option before I think. Be good to try and contact some of the employers in the US or at least make more donors aware – as Gerald said – that this is an option available to them.

I don't suppose Gift Aid applies to UK donations – this being a US non-profit. But perhaps that's something else we can look into at some point.

Must be after you have entered your payment details then – I can't afford any more this month or else I would work through it – but we had raised this matching of gifts option before I think. Be good to try and contact some of the employers in the US or at least make more donors aware – as Gerald said – that this is an option available to them.

I don't suppose Gift Aid applies to UK donations – this being a US non-profit. But perhaps that's something else we can look into at some point.

…
Even Dr. Ian Lipkin, a renowned Columbia infectious disease expert, has had trouble getting NIH funding for ME/CFS research. In 2010, Dr. Lipkin was recruited by the NIH to lead an investigation into the suspected mouse retroviruses. His study found that no link existed and theorized that the earlier findings, which suggested an ME/CFS connection, were the result of laboratory contamination.

Following that study, he continued seeking possible infectious triggers for the illness with funds from the Hutchins Family Foundation and has recently launched a video crowdfunding campaign to raise an additional $1 million or more. In the unusual public appeal, which he posted on the site of his Center for Infection and Immunity at Columbia, he noted that “we are off to an excellent start but the resources are insufficient to do what needs to be done, to do what the community deserves.”…

Sasha, let us know if you don't find it on the Columbia website. If someone now in the process of making a contribution doesn't chime in, I'll make a small contribution just to go back through the process myself…I remember it being there, but not much more.

Sasha, let us know if you don't find it on the Columbia website. If someone now in the process of making a contribution doesn't chime in, I'll make a small contribution just to go back through the process myself…I remember it being there, but not much more.

Thanks Gerald – I'll shove some more money in the slot and pay attention this time! Thanks for bring this up. :thumbsup:

You can 'heart' this article via a FB or google thing – I don't know if that helps jack it up some list or something? Anyway, I just did it.

You can also 'thumbs up' comments and I just did some. I also posted a comment with a link to CII's donations page and to the campaign website – it appears a bit weirdly on my screen so I'm not sure if it's visible on the comments list like everyone else's.

The comments are listed in order of how many thumbs up they've got – that may just be coincidence – but I'd be grateful if people could like CII's own comment and mine to keep those links high up, if we can, as well as any others you like.

Also, please post there that you've donated, if you have – set the norm and show people that this is a campaign they should be joining because it's going to succeed!

Argh, finally, my message is up! I had all sorts of trouble. Finally managed it on the fourth go by entering it using FB (a dummy account so please don't anyone start liking me or contacting me via it – I'm afraid that account gets 'total ignoral' from me!).

The comments that appear first on that page are FB ones and to make a comment you have to be logged into your FB account and hit the little 'comment' thing. I tried three times to post via the 'add your response' thing further down and it never appeared. No idea what the issue is.

Anyway, I'd be grateful if people could 'thumbs up' my message in case it helps get Columbia's donations page link and our website link up the page there.

I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and resources to publishing this article, featuring it on the top banner, and including it in the upcoming PR newsletter. My biggest and sincerest thanks to all.

I echo what vli wrote … a huge THANK YOU to everyone at Phoenix Rising for giving this crowdfunding campaign so much exposure! This well may prove to be the study that unlocks the mystery of CFS for so many people.

But we need everyone's support here. If you have not donated yet, please, PLEASE do so now!! Trust me, you will feel great after you do.

Fantastic initiative, a huge thank you to all who are involved. My mum and I have both donated and in the coming months I will again when finances allow. Fundraising events are a good way to see those dollars rise. A couple of years ago I did a screen free weekend for Invest in ME and was able to reach out to family and friends. I am bedridden so the only thing I could do was something like a screen free weekend.

I see some people post up requests for donations within the ME community which is great but as we only have finite resources spreading it out to family and friends increases funds. Let's do this 😀

The NIH, Kathleen Sebelius, and President Obama should be ashamed. Truly Ashamed.

I think you need to have a conscience in order to be ashamed, KS and PO don't have that, so I doubt they feel all that bad, look what they did to the insurance market in the US under the guise of getting more people insured and better care, neither has happened on the whole (I don't know of any local CFS drs who take Medicare), exactly the opposite.

They are political animals and only care about the political implications, which is why he has unconstitutionally (read as the Law of the land, and which his opposition sought to do months ago), but only when they find it convenient) altered his law about 30 times now, and counting!

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